Thanks, dear readers, for sharing with me your Psalms of comfort during this uncomfortable time. Keep them coming and I will return to them. Now I share a question from D that is close to my heart.
Q: Dear Rabbi Gellman: Thank you for sharing your thoughts with us readers. I learn from reading your column. I have particularly enjoyed the series of columns on the Psalms. I am sending this message to ask for your thoughts about caring for a spouse with dementia.
I am the spouse-caregiver for my wife. The doctors told me about five years ago that she has Alzheimer's disease; there are multiple other forms of dementia, as you know. I understand that she has a progressive disease that will slowly, over a period of years, be fatal.
Unfortunately, this disease impacts a very large number of Americans. The disease progresses over several years, requiring increasing care over time, often including in-home companion or nursing care, and sometimes requiring a transition to care from hospice or in a memory-care residential facility.
Sadly, over time, the disease continues to rob my wife of her very identity as reflected by the loss of long-term memories that comprised her life experience and made her who she became as an adult. Now, she frequently does not know who I am, she does not know where she is or what she should be doing. Visual hallucinations are part of her symptoms as she often sees "other people" doing things in the house. It is difficult to engage her in activities that still seem to interest her.
I welcome your thoughts for me, as a caregiver, as I continue to try to love, honor and cherish my wife, despite her increasing loss of her identity.
This disease is slowly taking away the person that I married so many years ago. I try to remember who she was so that I can try to remain true to that historical individual.
Thank you for your thoughts and thank you for your openness to people of all faiths.
A: Dear D, Love does not need to be repaid, but you are doing just that. You are repaying the love your wife gave to you freely and without limit and in all circumstances and conditions. You are lucky to have her and whatever she can understand now; she is blessed to have you in her broken life.
My father, Sol Gellman, died of Alzheimer's and I know in my own broken heart the pain of watching a body live while the mind dies. May God give you strength in your holy caregiving work.
First, a few medical issues need to be cleared up by you with your wife's doctors. Your wife has dementia but not all dementia is Alzheimer's disease. Dementia is a syndrome with many causes, and Alzheimer's is a disease with no known cure that is always fatal. Dementia can be caused by other diseases like Parkinson's, Huntington's and Creutzfeldt-Jacob disease. Make sure, if you can, the causes of your wife's dementia. Her treatment depends upon an accurate diagnosis and that is one of the problems. Alzheimer's cannot be definitively diagnosed until after death, when an autopsy can determine the presence of amyloid plaque in the brain.
For now, know that your presence near her and your touch (when that is medically safe) are important connections for her even if you cannot perceive that they are getting through. The last coherent thing my father said to me before he permanently entered the last fog of his life was this, "All I know is that I belong to you and you belong to me." Some part of your wife still knows who you are.
When Moses came down Mount Sinai with the tablets of the law and saw the people worshipping the golden calf, he smashed the tablets in a fit of rage. Then God sent him back up the mountain to receive a second set of tablets to place in the ark of the covenant so that Harrison Ford could eventually discover it.
According to legend, Moses was also commanded by God to pick up every single piece of the first broken commandments and put them into the arc with the whole second set. The point of the story is the point of your life and your marriage now. The broken and the whole are together in the same ark.
As hard as this caregiving surely must be for you, it is holy work and though your dear wife may have forgotten much, be assured that God almighty forgets nothing. Your care for her and your love for her will be rewarded in Heaven and before that, in the love and admiration of your family and friends who have seen you place her broken mind into the ark of God's eternal love.
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